Re: IV ABX Study for Psychosis

On Feb 18, 3:57 pm, itsybitsy...@xxxxxxxxx wrote:
At one time I would have encouraged people to participate in studies.
Sounds like a great altruistic selfless thing to do.--that at the same
time might benefit others and personkind in general.

Well, I was kinda thinking...helping other people while possibly
getting free meds. lol

Yes well many people who act altruistically have their own motives as
well. Sometimes they act altruistically because it makes them feel
better about themselves. Sometimes ;there might be a more tangible
benefit.

All in all though, mixed motives or not, at least they're acting
altruistically in part.

Which is more than one can say about many people.

I have a $1200 in network and a $1500 Out of network deductible
yearly. My insurance will pick up 100% of generic drugs, but I pay
full price until I reach my deductible (meds count toward the in
network). I still pay 20% of labs after reaching deductible. My LLMD
is out of network. My GP is in network. You do the math of how much I
have to pay before I get covered.

I have to say I am blessed with great insurance. Old fashioned
indemnity insurance. Recently they've farmed out the prescription
stuff and there are more and more things requiring pre certs (pain in
the ***) but overall it is great compared to what is out there. Best
thing is I can see any doctor I want, there is no in or out of network
stuff, I decide who I want to see and they reimburse period. And they
can't question medical necessity except for the hospital plan.

$100 deductible annually (I always hit it early and make sure to get
max refills prior to 12/31 when it starts over but I still hit the
$100 deductible in january every year) and the $100 is deducted 20%
per office visit or rx so I don't get hit with it all at once (and
still max it out in january every freaking year).

Hospital and tests are $400 yearly deductible but they charge it off
at $50 per incident or procedure even if my copay isn't the full $50.
Luckily I haven't been hospitalized for several years and try to limit
tests and all (I am much better than I once was I'm lucky and happy to
say).

BUT here's the downside: I pay through the nose for the insurance,
like $800 a month. And don't get it through my employer (used to but
now am self employed but kept the same insurance).

I will say though I haven't used it like when I was sickest (ran up
somewhere near $750 k in medicals*) my prescriptions are expensive and
I know there will come a time that I will need it again big time
though maybe not from Lyme.

* I say $750 k but it depends how you calculate it. You know when you
go to the hospital and get a bill and the test cost $3500 but since
they participate with your insurance it is only $175? I'm basing it on
the charges not what they get paid.

That whole thing is ironic to me. If you can't afford insurance and
probably are not in good financial position to pay you'd owe the $3500
but since your provider hospital partipates with the insurance the
insurance only pays and the hospital (or pharmacy or doctor) accepts a
lot less. Sometimes the difference is almost as much as my example--
often it IS multiples like I had an EMG and the charge was $1500 and
the neuorlogist took like $375. So the people in the worst position to
pay, pay the most?

Not only that but IF the hospital can do it for some percentage of
what they charge, why can they get away with charging multiples? So
what if the hospital participates. If they were losing money at the
rate they accept, what is going on--they're making it up in volume? Of
course not--they'd be losing money in volume the surest way to go out
of business.

Ridiculous.

And it is outrageous that the many things wrong with the health care
and insurance fields are in no way addressed in any presidential
candidates pie in the sky health care plans. Yeah it is a problem that
47 million are uninsured but hey if you fixed some of the problems
they could easily be paid for. Quality problems are in no way
addressed--so 47 million getting crappy health care isn't the answer.
There is basically no cost containment whatsoever or rationality in
health care spending. More money doesn't produce better health care
and that is why by almost every measure the US does NOT have the best
health care in the world, it is usually ranked 25-50. And insuring the
uninsured isn't by any means the whole answer and doesn't address some
of the actually relatively easily addressed problems--but don't get me
started on this topic.

I say when it comes to these candidates and their health care plans
just flip a coin, what's the difference? (although no way would I vote
for any republican the two democrats are basically republicans anyway
and if this country hasn't had enough of the republicans well I don't
know what it will take--so hillary or barrack no difference to me but
not mccain or any republican for any office--time to end the
fundamental corruption).

Oh sorry we're not supposed to discuss religion or politics at the
bar?

It sucks but my job pays for it so....

I hear ya.


However, given the "needs of science" study parameters and
requirements are very restrictive.

As it should be, in all fairness...however with a disease like this,
where we are all lab rats its hard to say what is fair and what's not.

Well same ethical issues for people with most diseases but yeah we've
all been lab rats or sewer rats with this one for sure.


Also there is typically a placebo control group--you might go without
necessary medication for the length of the study.

I am sure this happens. I do know, however, of a fellow in an RA study
who was allowed to continue to take his mexotrexate (sp?) during the
placebo part of the study. Which indicated to him he was on placebo.
Which seems pointless to me.

Yes the prescription of concomitant medications confounds studies,
sometimes deliberately.

Of course medicine and how it is affecting people is such a multi
factorial inquiry in the first place that the placebo controlled peer
reviewed thing is ostensibly some effort to control for the most basic
things. Can't ever contol for the countless factors at work, everyone
is different, everyone has different host factors (genetics), multiple
medical conditions, ages, etc

So studies and their conclusions are most valid when you look at
trends and of course most valid only for the group of people studied
and anyone who happens to be exactly like them (twins? but even twins
have different things going on).

So science is very inexact when it comes to medicine or vice versa but
one would hope they do their best (unfortunately not even close to
true too much of the time).

In essence Lyme patients are all in a study though it is
uncontrolled.
The so called llmds really are shooting in the dark, trial and error
generally and specifically with every patient.

Agreed...see what I said above about being a lab rat.

Yes agreed.

With the discovery of new coinfections some of which might or might
not be clinically significant the trial and error nature of all of
this is even more true.

I have felt for a long time, even before I knew the final dx was Lyme,
that I have something that they don't know about yet. Thus, for years,
even with various autoimmune misdiagnosi, I called it "the whatever it
is".

Misdiagnosi I like that!

I've often wondered if it is all in a name? What if lyme patients
conceded the field to allen steere and those guys and let them have
"lyme disease" and this was just given another name?

Bottom line who cares what it is called? It is getting treated
properly whether or not the doctors ever know what that is.

For example, what if they think you have x disease and give you the
antibiotic for x disease and it turns out you had y disease but
serendipitously the same antibiotic works. The doctor was wrong but
the patient was cured. No harm no foul. Call it a day and go home.

But I would suggest calling this something less sci fi (you like sci
fi movies I remember) than Morgellons disease.

Godzilla meets the morgellons. I just can't help not taking morgellons
seriously.

Is it all in a name?

(well in the case of morgellons I have to say it seems to me that
several fringe practitioners most of whom happen to be "llmds" and the
same ones who jump on pretty much every bandwagon rolling through town
without much scrutiny, are believers but it seems to be based on one
guy who looked at the fibers and unlike the other people said it isn't
fabric. And they seize on that one person, credible or not, and reject
the others who say yeah it is textile fibers. I don't know but the
delusional parasitosis diagnosis seems to be a good theory. Question
is then does lyme cause delusional parasitosis and I'd say why not it
sure can cause a lot of other psychiatric symptoms--take a look at
lymenut america for example, that whole board is herxing and pretty
much seems like an online insane asylum).

So my advice for every penny you're paying for it is stick to the
experiment that you've joined involuntarily.

LOL...I don't remember getting on the lab rat line. Its like getting
on the line for "trains"....

Sometimes you don't even realize the line you're getting in, you just
get in a line because other people are standing there.

Of course, no one signed up for this, it just happened.

Most people don't remember their tick bite, tick bites are generaly
painless and the tick feeds and falls off. So many don't get or don't
notice the rash. Symptoms can be very vague in the beginning and often
mistaken for so many other things. You could have gotten a tick
without camping or hiking or gardening just by walking out in your own
backyard one day.

You got in this line without ever realizing it.

But look at the interesting people you encounter.

Whatever is lost in the gi tract can often be made up for in terms of
higher dosage (athough more is not always better).

ARGH. I was on high dose tetracycline for a month and yacked my guts
up every morning and had to give up coffee in the interim. It did help
me, but at the time I was afraid it was doing more damage than
anything!

The cyclines can be tough. Some formulations are easier to take (doryx
instead of doxy, tabs instead of pills). And you can make it easier,
take it WITH food and even milk (talk to the pharmacist sometimes you
can might require dose adjustment of different formulation).

Tough thing is that at the high dosages llmds prescribe it can be even
tougher--dizzy nauseous etc.


There are probably many drugs that you could try instead of or in
addition to mino or any of the cyclines. I wonder what coinfections
have been considered in your case and or treated for? If you're
treating with donta you're probably only gonna get mino but that sure
won';t cure babesia and if bartonella is an issue and burrascano is
right that it is not classic bartonella henselae then mino isn't gonna
do the trick either.

OK..Penns and cephlos give me a rash, as does zithromax.

Did they before lyme or whatever disease you have?

Curious because while one has to be alert to side effects and
anaphylaxis, some theorize that these are immune modulated reactions
other than true anaphylaxis/allergy. Good to find an allergist
immunologist and work through it. There are a few who have worked with
lyme patients and are pretty hip to this.

And desensitization is very possible. They give you small doses,
monitered till you build up tolerance. During that time they watch you
and are prepared with crash cart epi pen etc. Slowly you get
desensitized. They work you up to full doses. After you're instructed
to be wary and have epi pen on hand and get to the er if you go into
anaphylaxis.

Scary? Yeah a bit. Elaborate? Yes. Does it work? Quite often. Depends
on the situation if they'll try it (usually got to be pretty
desperate--bad situation, no other good choices, patient NEEDS the
drug this is the only option kind of situation).

Biaxin and E-
Mycin give me some pseudo-'something or another' colitis.

pseudomembranous colitis aka antibiotic associated colitis.

Not good.

(yes a side effect NOT a herx).

BAD
intestinal reaction. Levaquin gives me severe vertigo as a lovely
neuro side effect.

Other quinolones too? Remember there are many drugs in most of these
classes, a bad reaction to one doesn't automatically mean a bad
reaction to all. It certainly means the chances are greater you have a
bad reaction to others but not always. And like with the
cephalosporins there are multi generations of the quinolones and each
drug is chemically a little different.


LLMD wanted me to add avelox to the mino AND
plaquenil. I'm actually afraid to add the avelox with how badly I do
on levaquin. PLaquenil I will add in next week if I can get my
protonix up to a level where I can control the acid without stomach
cramps. I did plaq for about 5 months a few years ago when I had a
primary sjogren's syndrome dx. They give it for that and lupus a lot.
It didn't help me, so I went off, but I am willing to try again in
conjunction with an antibiotic.

Plaquenil might be good it is both antimicrobial AND antiiflamatory
without doing what most steroids do which is suppress the immune
system.

Have you ever done mepron or malarone?

Doxy made me too photo sensitive. I would get burnt up just taking the
dog out. I had to wear a hat and gloves and long sleeves all summer.
When I finally got off that, I did the tetracycline. Rough but I know
if had benefit. Mino I tollerate well.

Yes doxy is a very photosensitive drug. You have to entirely avoid the
sun (and take vitamin d to make up for missing the sun). Doxy burns
can be severe.

But funny thing is that different formulations make you less
photosensitive, if I remember the tabs are not the problem the pills
are.

LLMD seems to think babesia and bartonella are possibilities, but I
don't think I tested positive. Because I have old pulminary scarring,

Old pulmonary scarring from what?

Pleurisy?


that could have been babesia or mycoplasm. I did have "anemia of
chronic disease", not only was I anemic, but my FE and ferritin were
dangerously low a few years back. I corrected that with Niferex. I
have not been anemic since, but haven't had the FE and ferritin
checked in a while.

Mild pattern of anemia that would perhaps be called anemia of chronic
disease is pretty consistent with babesia.

So far, as far as tollerating abx, mino has been the best I have done.
And NO, its not a herx when I am falling down and not sleeping on
levaquin...its adverse reaction...lol. I even fight my GP who wants to
give me levaquin for every sinus infection.

Oh come on get on the bandwagon EVERYTHING is a herx!


I'll make sure I watch the video when I get a chance. I'm not allowed
to stream video at work because it taxes our servers too much, and
have dial up at home...BUT I am sure I will get a chance to see it.


Dial up? You can't get on the information superhighway in a horse and
buggy. Come on now these days with the packages cable or dsl or fios
is probaby just as economical.

This is the year 2008. I didn't even think they offered dial up
anymore.

Got to get the husband or bf or whoever to spring for a modern way to
telecommunicate and get online.

I think the cyclines are great for every lyme patient because they
will cover and ought to be enough for many tickborne diseases whether
diagnosed or not and that includes ehrlichia, rmsf, and a wide variety
of other things. But mino alone for Lyme that is chronic and
refractory to treatment? I don't know that is ever going to do the
trick.

Me neither. Maybe an allergist IS necessary. An allergist will not
have a lot in their arsenal for adverse events, tho, which, IMHO, are
worse than the allergy.

Well they are doctors and have crash carts and usually have offices at
or near the hospital.

Other side effects like the pseudomembranous colitis did you take your
acidopholous?

However, with the allerigies to this stuff,
they are afraid that next time it could be worse and I could start to
swell...my LLMD is not quite sure what to do with me to be honest.

For one thing you should have an epipen handy and dye free benadryl.

You do sound like a tough case though.

But, she is trying. She had Lyme which is why she treats, and she
isn't in her own practice, she's not making a ton if money off her
patients. That makes me feel better. Opiates would make me feel even
better BUT you cannot have everything I guess...lol.

Why not opiates? lol

And many many drugs other than rocephin are available iv or im or both
in addition to orally. IF you need iv that is and on that topic I am
far from convinced. Even if needed the question of duration is a real
one. Maybe iv is needed to start but to my observation the sooner
people get off iv and on to follow up orals the better they seem to
do. And I am not convinced that the success rate for iv long term is
any better than orals long term.

I'm not yet convinced of much of anything! To be honest, I don't know
that I would even want an IV. If I had one, I certainly couldn't have
one where I live right now...a bad event would kill me before rescue
even came. I live in the middle of nowhere.

Again you need to have some survival basics. Epi pen, dye free
bendaryl are a good start. You can get a home defribilator. Home
oxygen tank. Hey go nuts! Treat yourself, be the first on your block.

Unfortunately many patients keep fighting this battle and it might be
one that isn't even necessary and too many doctors including the llmds
fight this battle too. To my observation the biggest issue is a
coinfection with babesia (and maybe IF burrascano is right the blos,
NOT just lyme--although lyme alone can be a real problem for sure).

Well, the LLMD keeps pushing this with me...I've been skeptical tho. I
could say, yeah, I have definate symptoms, but I haven't been nit in a
really really long time. I could believe BB lives this long in the
brain and tissue...but Babs? Any idea how long they can live before it
would kill you or burn out?

Even the yale crowd thinks lyme and babesia together are a real
problem and there are more current citations too:

BENACH JL, COLEMAN JL, HABICHT GS, MACDONALD A, GRUNWALDT E, GIRON
JA:
Serological evidence for simultaneous occurrences of Lyme disease and
babesiosis. J. Infect. Dis.(1985) 152:473-477.


MARCUS LC, STEERE AC, DURAY PH, ANDERSON AE, MAHONEY EB: Fatal
pancarditis in a patient with coexistent Lyme disease and babesiosis.
Demonstration of spirochetes in the myocardium. Ann.Intern. Med.
(1985)
103:374-376


MORO MH, ZEGARRA-MORO OL, BJORNSSON J et al.: Increased arthritis
severity in mice coinfected with Borrelia burgdorferi and Babesia
microti.
J. Infect.Dis. (2002) 186:428-431.


KRAUSE PJ, TELFORD SR 3rd, SPIELMAN A et al.: Concurrent Lyme disease
and babesiosis. Evidence for increased severity and duration of
illness.JAMA
(1996) 275:1657-1660


Crazy. Psychotic. ;-)

He he he. I asked for that, I guess.

LOL well if I really meant it I would let you know. Remember I'm
forgiving. All in all you seem pretty balanced to me. Reserving final
judgment though. ;-)

Just kidding (you SAID to call you that itchy--we did settle on itchy
right? I noticed that you've been calling me bart and I appreciate
that--cow just sounds so bovine).

Just don't call me late for dinner, Bart. You started a trend, even
Mini called me itchy on LNE.
Its catching on!

Okay but I think you said last time you'd go with itchy? Trying to
return the favor for you calling me bart instead of cow.

.

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